The condition was recently highlighted when journalist Brendan O'Connor wrote so movingly about his new baby daughter Mary. Here Susan Daly talks to those who have grown up with it, but refuse to be defined by it
By Susan Daly
Wednesday September 22 2010
When Declan Murphy moved away from his home in Waterford to go to Trinity College in Dublin, he knew his mum was worried about him. Declan (33) has Down Syndrome, but that may not have been the entire root of mum's concern.
"Well, I am the youngest of the family," says Declan. "I think she missed me."
Declan is part of an independent-minded, articulate generation of Irish people who have grown up with Down Syndrome but are refusing to be defined by it.
"Big into politics," he is one of a group of young adults with Down Syndrome who have been lobbying politicians as part of their 'My Opinion, My Vote' campaign to reform national policies that would help people with DS to attain their work, life and educational goals.
"I asked them for easy-to-read information in simple language and large fonts so we can learn about our rights," says Declan. "We are Irish citizens, yet we aren't able to get the same rights as everyone else."
May Gannon, counsellor and drama-therapist with Down Syndrome Ireland, says that when Declan and other members of the group put their views to politicians from every party in Dublin last March, the legislators were "blown away" by their presentation.
"What they had were people with Down Syndrome telling them that when they opened the door to politicians canvassing, the politicians would say 'Is your mum and dad in?' rather than looking for their vote."
Orla Hannon, a 23-year-old woman with Down Syndrome from Sixmilebridge in Co Clare, says she felt "strong and confident" when she gave the same presentation in Budapest and in Rome.
"We want to empower people with disability to participate in the political process," she says. "We want the right to get proper education, and get jobs."
Orla is devoted to books -- she reads every night -- and would like to work in a library. Her international political canvassing has given her a taste for travel. "I wouldn't mind going to Denmark," she says.
In essence, these are adults with dreams, ambitions and opinions. May Gannon's son Michael, for example, says that although his outgoing personality means he feels people see beyond his Down Syndrome, that equality must become the norm.
"People need to look at the person, not the disability," he says.
When journalist and broadcaster Brendan O'Connor wrote movingly about the birth of his new baby daughter Mary -- who has Down Syndrome -- in the Sunday Independent more than a week ago, he made special note of a piece of advice given to himself and his wife Sarah to "remember always that Mary is our baby, one half of each of us, and not a member of some tribe of Down's people, a membership that sets her apart from us".
This is absolutely vital for everyone to understand -- not just those close to someone with DS, says May.
"People with Down Syndrome are as different from each other as the families they come from," she says. "As to their ability level -- they sometimes live up or down to the expectations of people around them."
Pat Dorgan has more than lived up to the expectations of his family. The 46-year-old from Cork won two medals for Ireland in table tennis at the 2007 Special Olympics World Games in China and subsequently featured in a national poster campaign for the sport. His brother, the poet Theo Dorgan, composed a poem called My Brother for a pre-Games gala.
His sister Angela calls Pat "the glue that holds the family together". Pat and those high-achieving adults like him are changing the perception of what a person with Down Syndrome can do. It's a welcome progression, says Angela, from the condescension of old.
"A phrase that used to drive us mad as kids was, 'Ah sure, God help us'," she recalls. "People would ask us if he took sugar in his tea. We'd say: 'Why don't you ask him?'"
Similarly, 19-year-old Roisin de Burca from Connemara attracted positive attention last year when she became one of the few people with Down Syndrome to complete a full Leaving Certificate -- and she did all her subjects through Irish. She then completed a FETAC course in Business Administration at Galway IT.
"I felt proud of myself, something I can accomplish in life, something that belongs to me alone instead of the family," Roisin said last June after she won Bank of Scotland student of the year.
"We have moved from a time when people considered that a person with Down Syndrome was ineducable," says May.
"Research tells us that there is nothing that can be delivered in a special school that can't be considered in a mainstream school, given the proper supports."
Getting access to this support -- special-needs assistants, access to visual learning materials, speech therapy etc -- is a cause of worry, however.
Just this month, Andrew Boyle, whose daughter Zoe (7) has Down Syndrome, challenged Education Minister Mary Coughlan on the withdrawal of Zoe's special-needs assistance hours from 25 to five a week.
Pat Clarke, CEO of Down Syndrome Ireland, says that most of the charity's monies comes from fundraising initiatives like next month's Honey Days.
As better medical care ensures that the average life expectancy of a person with Down Syndrome has increased dramatically, it has thrown up new long-term challenges in relation to accommodation, employment and living.
"Our expectations and the expectations of our children have moved on," says Pat, whose son David (29) has Down Syndrome. "David's out there in the community, he's an excellent swimmer and has won a couple of medals for Ireland, he's at Dundalk IT three days a week and works at Tesco. He has a blue belt in Taekwondo. He could live independently. We're in the process of organising a housing association in our local area in Drogheda to do it."
The fact that the one in every 600 babies born in Ireland with Down Syndrome can now expect an average life expectancy of anything between 55 to 65/70 years can be cheering and sobering at the same time.
Peter Gaw, founder of the Down Syndrome Centre, says: "You get the initial shock of the diagnosis and within hours you're already thinking, 'What's going to happen when I'm not there?'"
Peter's two youngest children, daughter Tara (11) and son Harrison (9), were both born with Down Syndrome. It is important, he thinks, that parents of children with Down Syndrome are given hope and told that "it's not all doom and gloom".
"You try to get back to as normal a life as you can," says Peter. "My older two children are really good with the two young ones. We wouldn't change our family."
The Down Syndrome Centre now funds the country's first Down Syndrome liaison nurse, who works out of the National Children's Hospital in Tallaght. She reassures and informs parents when their baby is born with the condition, helping them get through what Sheila Campbell, Chief Executive of the centre, calls the "miasma" of confusion and hurt.
Beyond that, integration into mainstream schools is crucial, says May Gannon: "We might never have known a person with Down Syndrome growing up, whereas now the younger generation will tell you about Mary or Joe 'who is in my class in school and loves A, B and C'."
Down Syndrome Ireland (www.downsyndrome.ie) has 24 branches across the country. Their Boyne Valley Honey Days Campaign for October has pots of honey for sale for €2. www.downsyndromecentre.ie is a wonderful resource for people with DS and their families. They have also launched the first online charity dress shop with www.buymydress.ie